Dr. Charles Ray Jones.

This spring, Dr. Charles Ray Jones, a controversial and internationally known expert on Lyme disease in New Haven, was ready to quit.

For the last five years, Jones has been defending himself against accusations that he is violating standards of care. In March, the state Medical Examining Board declared him guilty of several charges.

He’s charged with treating patients without seeing them, prescribing medicine for children he’s never met and keeping improper medical records, among other things.

Jones argues that he has a six-month waiting list. In the interest of time, he orders blood tests before seeing patients. He once continued a prescription for an out-of-state patient after consulting with her mother, who’s a nurse.

Earlier this year, he was given four years of probation, a $10,000 fine and ordered to hire a monitor to examine his patient charts every month. The monitor, Jones expects, could cost between $2,000 and $10,000 a month.

“I can’t afford that,” Jones says. “I realized it’s hopeless.”

One day after learning of his punishment, however, a 7-year-old boy named Timmy came in for an appointment.

At an earlier visit with Jones, five months prior, Timmy exhibited problems like low muscle tone and no expressive speech. Another doctor diagnosed him with autism when he was 2 years old. Timmy’s mom noticed that when he was on antibiotics, his behavior became better. He exhibited fewer symptoms associated with autism. After he went off his medication, though, his symptoms returned to full force.

Jones thought the boy had Lyme disease, not autism.

At that first visit, Jones says, he put his hands on Timmy’s cheeks and looked into his eyes: “I hope I have the key to unlock your brain,” he said. Timmy then squirmed out of Jones’s lap and began to run around the room.

At Timmy’s follow-up visit, one day after Jones received his punishment, Timmy “climbed into my lap, put my hands on his cheeks and said, ‘Thank you for giving me the key to unlock my brain.’” Jones says. “Then he hugged me.”

“That’s why I stayed in [medicine],” he says.

“He came in at a good time.”

One of the reasons Jones is so controversial is because of patients like Timmy: Jones’ diagnoses and treatments call into question those of other doctors. While other doctors see autism or mental illness, Jones sees Lyme. Jones thinks one of the reasons he’s so disliked in the medical community is other doctors’ pride.

Jones’ supporters are so passionate about him that they’ve been paying attorney’s fees to defend him in front of the state Medical Examining Board, which hears cases of medical misconduct and metes out punishment. The board has the power to revoke a doctor’s license to practice medicine.

None of Jones’ patients has complained, he’s quick to point out, and none has been harmed by his treatment. He’s never been sued for medical malpractice. The charges against him have been levied by fathers involved in custodial battles over their children. In those cases Mom was in charge of treatment and Dad was in charge of payment and disputed the need for treatment. By complaining, Jones’ supporters say, Dad could get back at Mom and possibly skirt paying a costly medical bill. There were no allegations of harm done to the children.

Still, the state says, Jones’ style of medicine is a threat to others. (Due to the controversy involved, the Connecticut Medical Society refused to comment on charges against Jones.)

Jones has lost this most recent case and a similar case previously. He’s appealed both to the state appellate court. The legal proceedings have cost him more than $1 million, he estimates.

The punishment of Jones is more severe than the punishment of other doctors faced with more serious charges. For example, a Greenwich doctor who used his own sperm to impregnate a client in 2008 was reprimanded and fined $10,000. He’s still practicing.

Another doctor was charged in 2005 with not meeting standards of care: Two patients died from post-operative complications; one died during surgery; he unnecessarily removed a patient’s appendix. There were problems with eight of his other patients. This doctor’s license was put on probation for two years (compared to Jones’ four years) and he was fined $5,000.

After eight days of hearings in Jones’ case, the Medical Examiners Board “imposed a level of discipline on Dr. Jones’ medical license that the Medical Board apparently felt was appropriate to address identified deficiencies within Dr. Jones’ clinical practice,” said DPH spokesman William Gerrish in a prepared statement.

By July 20, if Jones has not found a state-licensed pediatrician to agree to become his monitor, he could lose his license or his license could be suspended.

The monitor would visit Jones’ practice once a month to review his patient files. If the monitor disagrees with anything in Jones’ file, he or she is to report it to the state.

At a June hearing in Hartford, Elliot Pollack, Jones’ attorney, told the Medical Examining Board that Jones’ assistant asked 209 pediatricians for help. None responded.

That’s because the case against him is so well publicized and so controversial that no one wants to be involved, Jones’ supporters say. The state says none has responded, because Jones didn’t try hard enough: There were no phone calls made and no follow-ups with the 209 pediatricians.

A Massachusetts company that contracts monitors located one for Jones’ case. The company, however, would not tell Jones who the monitor would be and wanted him to sign a contract that Attorney Pollack found troublesome.

The board had little sympathy. “Either find a monitor or stop practicing,” said board member Dr. Henry Jacobs.

As of press time, Jones did not have a monitor lined up.

Jones and his supporters see the case against him as a case against treating and acknowledging chronic Lyme disease — intended to send a message to other doctors.

Lyme disease was discovered in the mid 1970s in Lyme, Conn. It’s caused by deer tick bites and can cause fevers, headaches, fatigue and a distinctive bull’s-eye rash. Long-term, the infection can spread to the joints, heart, nervous system and brain. The common treatment is antibiotics up to 28 days, but some patients and doctors, like Jones, believe that’s not enough for chronic Lyme disease.

Advocates of chronic Lyme treatment say neither the state nor the medical community is doing enough. Volunteer-run Lyme Disease Task Forces have popped up in towns around the state to educate residents on how to prevent and treat Lyme.

Others see chronic Lyme as a myth and say it’s misused to diagnose medical mysteries, like long-term fatigue.

In any case, the Connecticut state legislature passed a bill in 2009 that protects doctors who treat chronic Lyme with antibiotics over extended periods. The law “allow[s] a licensed physician to prescribe, administer or dispense long-term antibiotics for a therapeutic purpose to a patient clinically diagnosed with Lyme disease.”

Robert Galvin, head of the state Department of Public Health (DPH), is one of only a few people to testify in 2009 against the bill, saying: “The unintended consequences of this bill will compromise the Department’s ability to protect patients with Lyme disease.” He said the bill left no flexibility, “particularly in cases where the care being provided to a patient deviates from current evidence-based practice.”

The bill passed unanimously in 2009. Jones and his patients hoped the law would protect him.

“Neither the Department’s initial charges, nor the Medical Board’s ultimate decision after the hearing, concerned the issue of chronic Lyme,” said DPH spokesman Gerrish.

“This case is about Lyme disease,” says state Rep. Jason Bartlett (D-Bethel), who sponsored the Lyme bill. “I think that law should afford Dr. Jones the protection he deserves.”

Bartlett says he’ll ask the state’s next attorney general to investigate whetherthe state DPH and the Medical Examiners Board are violating the Lyme bill.

Jones is being “harassed” for treating chronic Lyme, Bartlett says, and that the DPH and the Medical Examiners Board have a “vendetta” against him. He adds that the requirement to get a monitor is “garbage” and “ridiculous.”

“If the state thinks he’s such a danger, the state should pay for its own monitor,” he says.

“Dr. Jones is not being treated differently than any other practitioner who has a requirement for a monitor. All practitioners who are being monitored are required to find their own monitors,” says the DPH’s Gerrish.

Karen Gaudian, of Ridgefield, has two daughters, now 18 and 16, who have Lyme. They first became sick at ages 8 and 7. The eldest had severe fatigue. “The kind of fatigue that forces a child to crawl up the stairs. Taking a shower might be more than she could do in one day,” she says. Her other daughter had major stomach pain. Doctors blamed the stomach pain on nerves or a school phobia.

“But I knew she was ill,” Gaudian says. “You could tell by watching the way she’d hold her stomach. She was in a lot of pain, but she was still trying to play. I know my child and I knew there was more to it.”

Gaudian visited Jones, but had to stop because of the cost. Jones does not take insurance, because of reimbursement rates. Whereas most doctors spend 10 to 20 minutes with a patient, Jones spends two hours with new patients and one hour on follow-up visits. Jones couldn’t afford to keep his practice open if he relied on insurance payments.

The Gaudian girls are back seeing Jones again after a several-year hiatus and are slowly improving.

Gaudian is a member of the Ridgefield Lyme Disease Task Force. Two weeks ago, she says, the group visited Lyme to speak with people about preventing Lyme disease.

“How ironic is that?” she says. “We shouldn’t be doing this. The state should be providing prevention education.”

Her daughters would be “heartbroken” if Jones lost his license, Gaudian says.

She also calls the charges against Jones “disgusting.”

“He’s an incredible physician,” she says. “The only reason he’s putting up with this is because he can’t bear to see these kids not helped.”

Sitting in a leather chair in his New Haven office, 81-year-old Jones does not look like a man who arouses passionate disputes. He’s wearing a blue Adidastracksuit with his name embroidered on the back, and the type of black orthopedic sneakers you’d expect on a man his age.

Jones didn’t start out as a doctor — he was a divinity student at Boston University in the early 1960s. As an assistant minister with the Second Church Unitarians, Jones made house calls to people who couldn’t get out to go to church. Changing professions was a decision inspired by one of those visits: “I was in the home of an 80-year-old woman who was very badly stricken by arthritis. She grabbed my hand on the way out and said, ‘Please do something to help me in a real way,’ and that was it.”

He started focusing on cancer in New York, but moved to Hamden with his wife to raise a family and start a pediatric practice in New Haven. In the late ’60s, he noticed clusters of kids — several in a family — diagnosed with juvenile rheumatoid arthritis. Many had strep throat, he says. “When we treated them [for strep] with antibiotics, they got better. That was the beginning of it,” Jones says.

He saw more as time went on.

“It infected every part of the body, including the brain and the skin. We were treating them with six weeks of antibiotics. Then another six weeks if it didn’t work. There was a little boy, about 10 or 11, who was diagnosed with rheumatoid arthritis. We did several rounds of six weeks of antibiotics and a few weeks off. He did better on them, not off. He said to me, ‘If I’m better while I’m on the antibiotics, why don’t you keep me on them?’

“‘Well,’ I wondered ‘Why didn’t I think of that?’ He was on antibiotics for three of four years and now he’s in his late 40s and is perfectly well. From that point on, I started treating with antibiotics continuously until they were better and then for two months after that.”

That attitude is what’s turned Jones into the Pope of the Lyme disease community. It also turned him into a pariah of the academic and medical community.

“There are some people who say no, no, no don’t treat with long-term antibiotics,” says Jones, “but they don’t think twice about treating kids for acne with tetracycline [an antibiotic]. It’s no different.”

The Infectious Disease Society of America (IDSA) disagrees. According to its website, “Most patients who develop Lyme disease are cured with a single course of 10-28 days of antibiotics, depending on the stage of their illness. Occasionally a second course of treatment is necessary. More prolonged antibiotic therapy is not recommended and may be dangerous.”

The National Institutes of Health say long-term antibiotics use could lead to harmful side effects; it can also kill helpful bacteria naturally found in the body.

IDSA guidelines have an enormous impact on Lyme medical care. Its guidelines are followed by insurance companies, which in turn often restrict coverage for long-term antibiotic treatment. Those guidelines also influence doctors’ decisions and they conclude that chronic Lyme disease does not exist. Nonbelievers often cite the IDSA as proof.

But IDSA’s guidelines have not gone unchallenged. In 2008, Connecticut Attorney General Richard Blumenthal launched an investigation that found “serious flaws.”

Among them: Panelists who helped design the most recent guidelines (2006) had conflicts of interest. The panel’s chairman was biased against chronic Lyme and was allowed to “handpick a likeminded panel without scrutiny.”

Back in 2000, the IDSA panel removed a member who believed in chronic Lyme, Blumenthal said. Doctors and scientists with differing views tried to serve on the panel but were told it was fully staffed; the panel was later expanded. The IDSA panel also allowed several of its members to serve on another medical association’s Lyme disease panel. Then, Blumenthal said, each portrayed the others’ conclusions as corroboration.

In a 2008 press release, Blumenthal said: “The IDSA’s 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests — in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies — to exclude divergent medical evidence and opinion. In today’s health care system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions. As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards.”

After Blumenthal’s investigation, the IDSA agreed to create a panel to review its 2006 guidelines. In February, Blumenthal chided the IDSA for not following the agreement.

This spring, after a review process, the IDSA announced the panel stood by its original guidelines.

“Jones saved my children’s lives,” says Maggie Shaw, a nurse and member of the Newton Lyme Disease Task Force, a volunteer group that educates people about Lyme.

For six years, doctors misdiagnosed her son Ryan’s symptoms: headaches, fatigue, joint pain, personality problems and cognitive problems. “It was the saddest thing,” Shaw says. “He lost so much of his childhood.”

After seeing many other doctors, Shaw took Ryan to Jones, who, after a two-hour exam, diagnosed Ryan with Lyme and began treatment with antibiotics.

“Two and a half months later, my son was doing better,” Shaw says. “In fifth grade, he was tutored; he had no friends. Then in sixth and seventh grade, he made the honor role. His cognitive improvement was profound.”

Shaw has closely followed Jones’ legal battle and has called a few pediatricians on his behalf to be his monitor. All refused. One doctor told her he wouldn’t, because he didn’t want to be associated with the Lyme controversy.

Write to byagla@hartfordadvocate.com

Last Updated- April 2019

Lucy Barnes

AfterTheBite@gmail.com